Lung patients 'condemned to death as NHS withdraws their too expensive drugs'

By JENNY HOPE

Last updated at 22:55 24 March 2008

Hundreds of patients with a rare lung disease will be sentenced to death by plans to stop doctors prescribing a range of drugs on the NHS, it was claimed last night.

Campaigners have condemned proposals by the National Institute for Health and Clinical Excellence to withdraw the drugs because they are too expensive.

The condition, pulmonary hypertension, affects an estimated 4,000 people in the UK.

Only a quarter of these need the most expensive level of treatment.

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Sufferer Anna Baker with her son Bobby, aged five

Yet the plans by NICE, the Government's drug rationing body, mean no life-extending therapies will be available to new patients because the cost of the most expensive exceeds its threshold of £30,000 per head.

Only the cheapest drug used to combat the condition will remain available for patients.

The impotence drug Viagra is valuable in combating pulmonary hypertension's symptoms of breathlessness but sufferers say it will not prevent the heart failure the disease can induce.

Lung specialists currently combine it with inhaled or infused drugs such as prostacyclins for the most seriously affected, which can add £40,000 a year to the £12,000 cost.

Another group of drugs, endothelin receptor antagonists, are also under threat.

The cost of the most expensive treatments is on a par with approved HIV treatments or keeping one criminal in prison for a year.

The final decision, to be taken in July, will apply to England but doctors believe Scotland will follow suit.

Patients with pulmonary hypertension are usually diagnosed in their 40s and 50s and the time from diagnosis to death is only 30 months without effective treatment.

The disease causes blood pressure in the pulmonary artery to rise. Those who go downhill need hospital care - with a lung transplant the only other option.

Professor Andrew Peacock, one of the world's leading experts on the condition at the Western Infirmary, Glasgow, said: "One of the drugs we routinely use for the very sickest of the sick patients, prostacyclin, we're not going to be able to use at all.

"We're going to have to say to people, 'Sorry, no treatment. You're just going to have to have palliative care and you're going to die basically'."

Anna Baker, 25, a mother, from Ashby de la Zouch in Leicestershire, was diagnosed with pulmonary hypertension just over a year ago.

"This medication has given me my life back," she said. "I have to take the drug via a small pump 24 hours a day. I still get tired and have to limit what I do, but I have the confidence to do normal everyday things that just weren't possible last year."

As an existing patient, Mrs Baker will continue to get the expensive drugs prescribed on the NHS.

But she said: "I think it's outrageous that people with pulmonary hypertension in future might be denied the treatment."

NICE said its appraisal recommendations are preliminary and "may change after consultation".